Thursday, April 24, 2008

Please be praying . . .

tomorrow Isaiah has an appointment with the dermatologist for a skin biopsy. I know it's a simple thing, but I'm sure it still hurts a bit (and scary for a toddler). Please pray that Isaiah has peace during the procdure, and that he is almost oblivious to what's going on (he has gotten really touchy about where the rashes are). He's so strong! I don't think that the dermatologist will do the patch testing tomorrow - I think that will be in another week or so (the patches are placed on the skin for 2 days, then test results are read on the second day).

The biopsy will tell us how many mast cells are in the skin's surrounding blood vessels, and may even tell us what type of eczema/dermatitis this is.

I forgot to mention - Isaiah lost a portion of one of his nails today (because of the rash). His nail didn't form correctly, and was really thin. He was scratching today, and the nail cracked where the most damage to the nail was. It's just so weird to see him go through all this. Just a few months ago, I could put a little hydrocortisone on a small breakout and it would be gone the next morning. I hate seeing him itch so much. I just keep looking forward to the day where God totally heals him, and he can have a normal birthday cake with normal ice cream. No more unexplained rashes, no more tummy aches because of allergies, no more hives, no more worries about anaphylaxis. No more insanely long grocery store trips that last at least an hour and a half because you have to read every ingredient on every label, even if it's the brand you always buy - just because you never know when ingredients or factories will change. No more insane grocery bills, either. The bright side of it all is that I've never seen a toddler eat as healthy as Isaiah - what toddler eats brussels sprouts, asparagus, and avocados? =0) I can only hope that he continues to eat this healthy. We are also so blessed to live in a country where it's easy to find foods that Isaiah can eat, even in a state/city where there are health food stores close by that carry foods safe for Isaiah. Even if there weren't a store we could go to, we could go online and buy most of the foods there.

Well, I will let you know how things go - it's about time for me to go to sleep. =0) Have a great evening!

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Isaiah 58:8-9

Then your light will break forth like the dawn,and your healing will quickly appear;then your righteousness will go before you,and the glory of the LORD will be your rear guard.Then you will call, and the LORD will answer;you will cry for help, and he will say, "Here am I".

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Isaiah-isms =0)

This is our new addition to the page - Isaiah-isms. He can say some pretty funny things . . . it's a tad scary, all those thoughts that have been locked up for so long . . . . =0) Here are a few of the things Isaiah has been saying lately . . .

"You can't be sad when you poop, Mom!"

"I got a chicken-cups, eeep!" (hiccups)

"I not go to bed ta-day!"

"To if-fibiddy an beyon!" (thanks, Buzz Lightyear!)

"I can't wanna do it."

"Take it-ta da top and cha-cha-cha!" =0) (I have no idea where that came from, but he's too cute when he says it!) =0)

"La hoo-hah-rah-cha, la hoo-hah-rah-cha. An he needs a get a kit-tar!" (kit-tar = guitar) =0)

"Dri-ben tuh Tord's tar-by!" (I'm in the Lord's army . . .)

"Aaaaaaagh! You're a muggering me!" =0)

"Lord Jesus to play!" ("Lord, teach us to pray.") =0)

"I hab wubed you with an eber-asting wub." ("I have loved you with an everlasting love.") =0)

Isaiah

In addition to severe food and environmental allergies, Isaiah has also been diagnosed with systemic mastocytosis. The combination of the two is unusual and seem to irritate each other - the allergic reactions are are worse because of the masto, and the masto reactions are worse because of the allergies.

A little about Mastocytosis . . .

Mastocytosis is a group of rare disorders of both children and adults caused by the presence of too many mast cells (mastocytes) and CD34+ mast cell precursors in a person's body. It can affect just the skin or it can also affect internal organs such as the stomach, lungs, and intestines. Instead of being an autoimmune disease, mastocytosis is considered to be a myeloproliferative disease in that the bone marrow is producing too many of a certain type of cell - in this case, mast cells. Some of the possible symptoms of mastocytosis look a lot like food or environmental allergies. A person with mastocytosis may be convinced that they have food allergies but the antibody tests may be negative.

According to FAAN, "an anaphylactic reaction may begin with a tingling sensation, itching, or a metallic taste in the mouth. Other symptoms can include hives, a sensation of warmth, wheezing or other difficulty breathing, coughing, swelling of the mouth and throat area, vomiting, diarrhea, cramping, a drop in blood pressure, and loss of consciousness. These symptoms may begin within several minutes to two hours after exposure to the allergen, but life-threatening reactions may get worse over a period of several hours.

In some reactions, the symptoms go away, only to return two to three hours later. This is called a “biphasic reaction.” Often these second-phase symptoms occur in the respiratory tract and may be more severe than the first-phase symptoms. Studies suggest that biphasic reactions occur in about 20 percent of anaphylactic reactions."

Watch my Autism Speaks video message

My Dad (aka Grandpa . . . okay, so he's Ye-Ye)

A little about Waldenstrom's Macroglobulinemia

Waldenstrom's macroglobulinemia is a rare, chronic cancer that is classified as a plasma cell neoplasm. It affects plasma cells, which develop from white blood cells called B-lymphocytes, or B cells.

B cells form in the lymph nodes and the bone marrow, the soft, spongy tissue inside bones. They are an important part of the body's immune (defense) system. Some B cells become plasma cells, which make, store, and release antibodies. Antibodies help the body fight viruses, bacteria, and other foreign substances.

In Waldenstrom's macroglobulinemia, abnormal plasma cells multiply out of control. They invade the bone marrow, lymph nodes, and spleen and produce excessive amounts of an antibody called IgM. Excess IgM in the blood causes hyperviscosity (thickening) of the blood.

Waldenstrom's macroglobulinemia usually occurs in people over age 65, but can occur in younger people. A review of cancer registries in the United States found that the disease is more common among men than women and among whites than blacks.

Some patients do not experience symptoms. Others may have enlarged lymph nodes or spleen, and may experience fatigue, headaches, weight loss, a tendency to bleed easily, visual problems, confusion, dizziness, Alzheimer's-like symptoms, and loss of co-ordination. These symptoms are often due to the thickening of the blood. In extreme cases, the increased concentration of IgM in the blood can lead to heart failure (taken from http://www.iwmf.com/WhatIsWM.htm).